Property Rights in Genetic Information

The primary theme of this paper is the normative case against ownership of one's genetic information along with the source of that information (usually human tissues samples). The argument presented here against such "upstream" property rights is based primarily on utilitarian grounds. This issue has new salience thanks to the Human Genome Project and "bio-prospecting" initiatives based on the aggregation of genetic information, such as the one being managed by deCODE Genetics in Iceland. The rationale for ownership is twofold: ownership will protect the basic human rights of privacy and autonomy and it will enable the data subjects to share in the tangible benefits of the genetic research. Proponents of this viewpoint often cite the principle of genetic exceptionalism, which asserts that genetic information needs a higher level of protection than other kinds of personal information such as financial data. We argue, however, that the recognition of such ownership rights would lead to inefficiency along with the disutility of genetic discoveries. Biomedical research will be hampered if property rights in genes and genetic material are too extensive. We contend that other mechanisms such as informed consent and strict confidentiality rules can accomplish the same result as a property right without the liabilities of an exclusive entitlement.     

移动APP用户隐私信息设置行为影响因素及其组态效应研究

【目的/意义】在APP隐私泄露问题日趋严峻的环境下,移动应用提供的隐私设置功能为用户保护自身的隐 私信息提供了一种重要的途径,了解哪些因素会影响以及如何影响移动应用APP用户的隐私设置行为,有利于加 强用户个人隐私保护和改进隐私设置功能。【方法/过程】本研究基于保护动机理论与社会认知理论的基本思想,提 出七个条件变量并采用问卷调查法搜集数据,然后使用模糊集定性比较分析法对条件变量与用户隐私设置行为结 果变量之间的多元因果路径进行分析。【结果/结论】用户主体因素（感知风险、感知隐私控制、隐私关注和行为效 益）是用户隐私设置行为产生的必要条件;同时,用户隐私设置行为的条件组合路径包括了政策保障缺失型和隐私 泄露负面经历驱动型等五条不同路径。【创新/局限】研究问题和研究思路具有一定创新性,例如关注移动APP用户 隐私信息设置行为及其多元因果路径关系,但是也存在着研究变量数量较少,样本抽样方法值得改进等不足。     

Putting mobile application privacy in context: An empirical study of user privacy expectations for mobile devices

Users increasingly use mobile devices to engage in social activity and commerce, enabling new forms of data collection by firms and marketers. User privacy expectations for these new forms of data collection remain unclear. A particularly difficult challenge is meeting expectations for contextual integrity, as user privacy expectations vary depending upon data type collected and context of use. This article illustrates how fine-grained, contextual privacy expectations can be measured. It presents findings from a factorial vignette survey that measured the impact of diverse real-world contexts (e.g., medical, navigation, music), data types, and data uses on user privacy expectations. Results demonstrate that individuals’ general privacy preferences are of limited significance for predicting their privacy judgments in specific scenarios. Instead, the results present a nuanced portrait of the relative importance of particular contextual factors and information uses, and demonstrate how those contextual factors can be found and measured. The results also suggest that current common activities of mobile application companies, such as harvesting and reusing location data, images, and contact lists, do not meet users’ privacy expectations. Understanding how user privacy expectations vary according to context, data types, and data uses highlights areas requiring stricter privacy protections by governments and industry.     

Genetic testing and its implications: human genetics researchers grapple with ethical issues.

To better understand ethical issues involved in the field of human genetics and promote debate within the scientific community, the author surveyed scientists who engage in human genetics research about the pros, cons, and ethical implications of genetic testing. This study contributes systematic data on attitudes of scientific experts. The survey finds respondents are highly supportive of voluntary testing and the right to know one's genetic heritage. The majority consider in utero testing and consequent pregnancy termination acceptable for cases involving likelihood of serious disease but disapprove for genetic reasons they consider arbitrary, leaving a gray area of distinguishing between treatment of disorders and enhancement still to be resolved. While safeguarding patient confidentiality versus protecting at-risk third parties (kin, reproductive partners) presents a dilemma, preserving privacy from misuse by institutional third parties (employers, insurers) garners strong consensus for legislation against discrimination. Finally, a call is made for greater genetic literacy.     

Information technology and privacy: conceptual muddles or privacy vacuums?

Within a given conversation or information exchange, do privacy expectations change based on the technology used? Firms regularly require users, customers, and employees to shift existing relationships onto new information technology, yet little is known as about how technology impacts established privacy expectations and norms. Coworkers are asked to use new information technology, users of gmail are asked to use GoogleBuzz, patients and doctors are asked to record health records online, etc. Understanding how privacy expectations change, if at all, and the mechanisms by which such a variance is produced will help organizations make such transitions. This paper examines whether and how privacy expectations change based on the technological platform of an information exchange. The results suggest that privacy expectations are significantly distinct when the information exchange is located on a novel technology as compared to a more established technology. Furthermore, this difference is best explained when modeled by a shift in privacy expectations rather than fully technology-specific privacy norms. These results suggest that privacy expectations online are connected to privacy offline with a different base privacy expectation. Surprisingly, out of the five locations tested, respondents consistently assign information on email the greatest privacy protection. In addition, while undergraduate students differ from non-undergraduates when assessing a social networking site, no difference is found when judging an exchange on email. In sum, the findings suggest that novel technology may introduce temporary conceptual muddles rather than permanent privacy vacuums. The results reported here challenge conventional views about how privacy expectations differ online versus offline. Traditionally, management scholarship examines privacy online or with a specific new technology platform in isolation and without reference to the same information exchange offline. However, in the present study, individuals appear to have a shift in their privacy expectations but retain similar factors and their relative importance??the privacy equation by which they form judgments??across technologies. These findings suggest that privacy scholarship should make use of existing privacy norms within contexts when analyzing and studying privacy in a new technological platform.     

Toward a Typology of Internet Users and Online Privacy Concerns

Traditional typologies of consumer privacy concern suggest that consumers fall into three distinct groups: One-fourth of consumers are not concerned about privacy, one-fourth are highly concerned, and half are pragmatic, in that their concerns about privacy depend on the situation presented. This study examines online users to determine whether types of privacy concern online mirror the offline environment. An e-mail survey of online users examined perceived privacy concerns of 15 different situations involving collection and usage of personally identifiable information. Results indicate that the vast majority of online users are pragmatic when it comes to privacy. Further analysis of the data suggested that online users can be segmented into four distinct groups, representing differing levels of privacy concern. Distinct demographic differences were seen. Persons with higher levels of education are more concerned about their privacy online than persons with less education. Additionally, persons over the age of 45 years tended to be either not at all concerned about privacy or highly concerned about privacy. Younger persons tended to be more pragmatic. Content and policy implications are provided.     

The non-monetary benefits of mobile commerce: Extending UTAUT2 with perceived value

Consumers can conduct mobile commerce via their smartphones. They can search for products and when ready, they pay and have the products delivered to their homes. By sharing personal information, they receive faster and more customized service. Because of the risk of loss of privacy, consumers need to balance their privacy concerns against the perceived value of enhanced mobile commerce. In this empirical study, the unified theory of acceptance and use of technology (UTAUT2) is modified where perceived value replaces price value to represent the value of an IT artifact that has no direct costs attributable to it. The framework is extended to include constructs from the privacy calculus. In addition, the construct of personal innovativeness is added as a moderator with the anticipation that owners of smartphones who are more personally innovative will be more willing to share information. From an empirical study of Canadian smartphone owners, the results show that perceived privacy concerns influence perceived value and that intention to use is significantly influenced by hedonic motivation and perceived value.     

图书馆读者隐私权的侵权表现与法律保护

图书馆是读者获取信息的重要媒介,也是读者隐私保护的重要场所。目前对读者隐私权侵犯的情况屡见不鲜,我国现行法律虽已将读者隐私权纳入民事权益加以保护,但立法上欠缺明确详尽的规定。因此,在法律上明确规定读者隐私权保护的模式、保护的义务和违反该义务应承担的法律责任,对推进图书馆法治建设具有重要意义。     

电子政府信息公开隐私权保护制度

隐私信息是政府信息公开的例外,但有时政府信息公开又在无形中侵害公民隐私权。公民既要保护自己的隐私权,免受他人获取、公开和传播隐私信息,又希望政府信息全面公开,以充分保障自己的知情权。尤其在人们越来越注重保护个人隐私权的数字时代。因此,政府机关在公开政府信息的同时,如何能够做到既合理公开政府信息又保护公民的隐私权就值得思考。     

Privacy exchanges: restoring consent in privacy self-management

This article reviews the qualitative changes that big data technology introduced to society, particularly changes that affect how individuals control the access, use and retention of their personal data. In particular interest is whether the practice of privacy self-management in this new context could still ensure the informed consent of individuals to the privacy terms of big data companies. It is concluded that that accepting big data companies’ privacy policies falls short of the disclosure and understanding requirements for informed consent. The article argues that the practice of privacy self-management could remain viable if the review, understanding and acceptance of privacy agreements is streamlined, standardized and automated. Technology should be employed to counter the privacy problems created by big data technology. The creation of the privacy exchange authorities (PEA) is proposed as a solution to the failures of privacy self-management. The PEA are intermediaries that empower individuals to define their own privacy terms and express informed consent in their dealings with data companies. They will create the technological infrastructure for individuals to select their own privacy terms from a list of standard choices, potentially only once. The PEA will further mediate the delivery and authentication of the individual users’ privacy terms to data companies. A logical proof of concept is offered, illustrating the potential steps involved in the creation of the PEA.     

生物大数据下人体基因信息的保护境遇及应对———以生物样本库为切入点

随着生命科学与信息科学不断地交叠发展，推动了生物大数据时代的到来。生物大数据正在深刻影响着生物医学，俨然已成为增速较快的大数据类型之一，并助推“精准医学”的普及和应用。但是，生物信息数据固然无法脱离生物样本库这一基础性设施而独立存在。并且存储人体基因信息的生物样本库却极具特殊性，源于人体基因信息揭示出了一个人最为敏感、最深层次的个人信息，与个人的生命特征息息相关。因而如果不能对人体基因信息进行周严的保护，必然会引发人的主体性地位的撼动。所以，须从个体、群体、国家三重视角审视当下人体基因信息的不合理披露所带来的风险与危害，并对此采取有效的应对方案，以实现生物样本库的良性运转，增进我国民众的福祉。     

隐私疲劳视角下智能穿戴设备用户隐私信息保护行为的影响因素研究

【目的/意义】探究隐私疲劳视角下智能穿戴设备用户隐私信息保护行为的影响因素,对降低用户隐私疲 劳、提高隐私保护意愿,从而促进用户进行隐私信息保护具有重要意义。【方法/过程】基于应对理论与保护动机理 论,构建了隐私疲劳视角下智能穿戴设备用户隐私信息保护行为的影响因素模型,并利用结构方程模型（SEM）与 模糊集定性比较分析（fsQCA）方法进行综合研究。【结果/结论】①SEM结果显示,感知风险、感知收益、感知信任、自 我效能、反应效能与反应成本等认知因素显著影响隐私疲劳;隐私关注、感知信任、自我效能、反应效能与反应成本 等认知因素显著影响隐私保护意愿;隐私疲劳对隐私保护意愿和隐私信息保护行为具有显著负向影响;隐私保护 意愿对隐私信息保护行为具有显著正向影响。②fsQCA结果显示,有三种构型会触发智能穿戴设备用户的隐私信 息保护行为。【创新/局限】将隐私疲劳引入隐私信息保护行为研究中,综合运用SEM与fsQCA方法探究变量间的复 杂因果关系,但样本仅针对智能手表和手环的使用者,样本范围存在不足。     

God's signature: DNA profiling,the new gold standard in forensic science

In the mid-1980s, when the first DNA profiling techniques were developed, the name DNA 'fingerprinting' was widely used. At the time, fingerprinting was a well-established forensic method, and it was rarely questioned in the courts. Fingerprint examiners were permitted to describe matching prints as evidence of individual identity, and they were not required to give probability estimates. Despite its nominal association with the older technique, DNA 'fingerprinting' went through a period of controversy, especially in the US courts. The association with fingerprinting was questioned, and experts were required to qualify their testimony with probability figures. Heated debate occurred in scientific publications and law courts about the statistical and population genetic assumptions that went into the probability calculations presented in court cases. However, by the late 1990s DNA profiling was so widely accepted that it became a basis for invidious comparison with all other forms of forensic evidence, including fingerprinting. In the past three years, the admissibility of fingerprint evidence has been challenged in several US federal and state courts. This article discusses the socio-legal and socio-technical issues that led to the inversion of credibility that characterized the intertwined history of the two techniques.     

RFID: The Next Serious Threat to Privacy

Radio Frequency Identification, or RFID, is a technology which has been receiving considerable attention as of late. It is a fairly simple technology involving radio wave communication between a microchip and an electronic reader, in which an identification number stored on the chip is transmitted and processed; it can frequently be found in inventory tracking and access control systems. In this paper, we examine the current uses of RFID, as well as identifying potential future uses of the technology, including item-level tagging, human implants and RFID-chipped passports, while discussing the impacts that each of these uses could potentially have on personal privacy. Possible guidelines for RFID’s use, including Fair Information Principles and the RFID Bill of Rights are then presented, as well as technological solutions to personal privacy problems, such as tag killing and blocker tags, as well as simple aluminum foil shields for passports. It is then claimed, though, that guidelines and technological solutions will be ineffective for privacy protection, and that legislation will be necessary to guard against the threats posed by the RFID. Finally, we present what we believe to be the most important legislative points that must be addressed. Vance Lockton has recently completed the M.Sc. program at the University of British Columbia, majoring in Computer Science. Richard S. Rosenberg is a professor emeritus in the Department of Computer Science at the University of British Columbia; the third edition of his book, “The Social Impact of Computers”, was published by Elsevier Academic Press in 2004.     

Contact tracing apps and values dilemmas: A privacy paradox in a neo-liberal world

Contact tracing apps are presented as a solution, if not the solution, to curb pandemics in the Covid-19 crisis. In France, despite heated public institutional debate on privacy related issues, the app was presented by government as an essential benefit for protecting health and lives, thus avoiding both politicians and citizens to feel morally responsible and looking guilty, and as essential to recover our freedom to move. However we argue that, while detection of cases have still not been reported after 10 days and one million app downloads - a situation comparable to Australia who launched its app a month before -, the adoption of the app generates important risks to our informational privacy, surveillance and habituation to security policies. It also may create discrimination, distrust and generate other health problems such as addiction and others as 5G technology continues to be deployed without prior impact studies. Finally the smartphone app against covid epidemics appears as an extreme case of the privacy paradox where the government plays on the immediate benefits and downplays long-term concerns while inducing a technology of self. Contact tracing apps may become an emblematic case for digital transformation and value changes in the western world.     

Identity,profiling algorithms and a world of ambient intelligence

The tendency towards an increasing integration of the informational web into our daily physical world (in particular in so-called Ambient Intelligent technologies which combine ideas derived from the field of Ubiquitous Computing, Intelligent User Interfaces and Ubiquitous Communication) is likely to make the development of successful profiling and personalization algorithms, like the ones currently used by internet companies such as Amazon, even more important than it is today. I argue that the way in which we experience ourselves necessarily goes through a moment of technical mediation. Because of this algorithmic profiling that thrives on continuous reconfiguration of identification should not be understood as a supplementary process which maps a pre-established identity that exists independently from the profiling practice. In order to clarify how the experience of one’s identity can become affected by such machine-profiling a theoretical exploration of identity is made (including Agamben’s understanding of an apparatus, Ricoeur’s distinction between idem- and ipse-identity, and Stiegler’s notion of a conjunctive–disjunctive relationship towards retentional apparatuses). Although it is clear that no specific predictions about the impact of Ambient Intelligent technologies can be made without taking more particulars into account, the theoretical concepts are used to describe three general scenarios about the way wherein the experience of identity might become affected. To conclude, I argue that the experience of one’s identity may affect whether the cases of unwarranted discrimination resulting from ubiquitous differentiations and identifications within an Ambient Intelligent environment, will become a matter of societal concern.     

隐私权的权利冲突与立法选择——以网络时代的“人肉搜索”为视角

隐私权是自然人享有的使自己的隐私不受不合理的侵犯或在不违背公序良俗的前提下可自由处分的一种人格权.在与公权力发生冲突时,应以社会公益优先为原则,但在特别情况下,应当优先保护隐私权;在与私权利发生冲突时,应当优先保护隐私权.我国现行法律在立法思想、立法体系、立法定位和保护方式上仍存在不足,应当加快立法进程,建立起与社会发展和科技进步要求相匹配的法律保障.     

Genetic testing and its implications: human genetics researchers grapple with ethical issues

To better understand ethical issues involved in the field of human genetics and promote debate within the scientific community, the author surveyed scientists who engage in human genetics research about the pros, cons, and ethical implications of genetic testing. This study contributes systematic data on attitudes of scientific experts. The survey finds respondents are highly supportive of voluntary testing and the right to know one's genetic heritage. The majority consider in utero testing and consequent pregnancy termination acceptable for cases involving likelihood of serious disease but disapprove for genetic reasons they consider arbitrary, leaving a gray area of distinguishing between treatment of disorders and enhancement still to be resolved. While safeguarding patient confidentiality versus protecting at-risk third parties (kin, reproductive partners) presents a dilemma, preserving privacy from misuse by institutional third parties (employers, insurers) garners strong consensus for legislation against discrimination. Finally, a call is made for greater genetic literacy.     

论图书馆信息伦理教育

本文从读者歧视、读者隐私、知识产权和信息服务的社会责任等方面概述了网络环境下图书馆的主要信息伦理问题,指出图书馆信息伦理教育主要包括信息伦理基本理论、公共信息伦理和职业信息伦理教育三个方面,探讨了对图书馆员进行信息伦理教育应采取的若干途径和方法。     

Privacy in social networks: An analysis of Facebook

The only way to be aware of the risks and threats of Facebook, the most commonly used social networking site in the world and Turkey, is to be a careful user changing the default settings or simply not to have a Facebook account. In Turkey, there is still no study in which personal information shared though social networking sites has been evaluated in terms of privacy. For this reason, the findings obtained of this study have a great importance in the general picture of the current situation and drawing attention to the risks of the issue in Turkey where there are no legal arrangements effectively protecting the users from such sites. This study aims to investigate the Facebook privacy of information professionals who are members of KUTUP-L, and to determine the sensitivity and level of awareness of information professionals in Turkey. Facebook user profiles of 400 information professionals, all KUTUP-L members, have been analyzed in a study examining 32 different privacy settings. A privacy score has been calculated for each user, and the relations between privacy results have been analyzed. The findings at the end of the study show that information professionals in Turkey do pay attention to privacy, and most of the users change the default settings in order to protect their personal information.